Gastroenterology Today Spring 2022

NEWS
GASTROENTEROLOGY TODAY - SPRING 2022
Healthcare survey highlights
the impact of the pandemic
on IBD patient care
Over 7,000 people responded to the
Crohn’s & Colitis UK Healthcare Survey,
providing an insight into how IBD patients
experienced healthcare during 2021.
The responses showed that health services
have continued to be disrupted by the
coronavirus pandemic and there’s been a big
impact on patient care. Difficulties accessing
GPs, specialists, medicines, tests, and
procedures have led to delays in diagnosis,
flares, and complications for people with
Crohn’s and Colitis. Mental wellbeing,
relationships, and ability to work have also
been affected.
Ruth Wakeman, Director of Services,
Advocacy & Evidence at Crohn’s & Colitis
UK says: ‘The results of the Healthcare
Survey highlight that the pandemic has
exacerbated existing issues with resourcing
of IBD services, which need to be addressed,
but also some opportunities as services
have adapted to the pandemic. We are
very grateful for the care and support that
healthcare professionals continue to give
to people with Crohn’s and Colitis in such
difficult circumstances.’
The results showed that whilst huge efforts
had been made to deliver excellent care for
people with Crohn’s and Colitis, prioritisation
and investment are vital to tackle increasingly
long waits for care. The recent Getting it Right
First Time (GIRFT) gastroenterology report
called for more proactive management of IBD,
with the aim of reducing admissions. It also
highlighted improvements that could be made
to triage to speed up diagnosis and early
treatment.
This survey, which was conducted between
August and October 2021, asked questions
about experiences of healthcare during the
previous 6-12 months. It builds on previous
surveys by Crohn’s & Colitis UK, including
the Life in Lockdown Survey in 2020 and IBD
Patient Survey in 2019, all contributing to
build a comprehensive view of healthcare over
the last 3 years.
What people with living with Crohn’s and
Colitis said
Diagnosis
Many said that getting a diagnosis during
the pandemic has been difficult, with 29% of
respondents diagnosed during the previous
12 months reporting that this had taken
over a year. This is an increase from 26% in
2019. Respondents also reported that it had
taken longer for treatment to start following
diagnosis. 41% said it took more than two
weeks for treatment to start, compared to
2019 when only 24% reported waiting more
than two weeks for treatment.
Access to healthcare professionals
The results also showed that people found
it harder to get through to IBD teams for
specialist advice, with 27% of those who tried
to contact their advice line saying they did not
get a response by the end of the next working
day.
This was in addition to 41% of those who had
needed care from their GP during the previous
6 months saying they had been unable to get
the care they needed. Furthermore, 29% had
not been able to get the help they needed from
urgent care services.
Access to medicines, tests and procedures
The results indicate a particularly big disruption
to surgery and colonoscopy. 29% reported
cancelled surgery and 24% cancelled
colonoscopies, with many still waiting for a
new date.
Additionally, 18% had experienced disruption
to getting medication.
Impact of difficulties accessing health
services or treatment
22% of those who have needed health
services or treatment during the previous 6
months said that difficulties accessing this had
resulted in a flare of their condition. In addition
to this, 24% reported that their mental health
had been affected. Respondents relayed
how this has led to time off work, affected
relationships and ability to do everyday tasks.
Changes to how patients access care
The survey found that 72% of those who had
needed outpatient appointments during the
previous 6 months had mostly had these by
telephone, with only 3% having mostly video
appointments. Only 13% were offered a
choice. Comments highlighted the benefits of
remote appointments, but also preferences for
some face-to-face appointments. Whichever
method was used, quality of care and a
personalised approach were considered
important.
Quality of care
Despite the challenges during this period, 56%
felt that their quality of care was the same as
before the pandemic, with a small proportion
(4%) considering it was better.
More information about the survey can be
found on the Crohn’s & Colitis UK website. If
you’re an IBD Nurse Specialist or Healthcare
Professional working in IBD, you may want
to use these results alongside your service’s
IBD UK Benchmarking reports as your service
refocuses, adapts, and redesigns for the
future. If you would like to seek feedback and
involve your IBD patients in service redesign,
the charity also has a Patient Engagement
Toolkit, also available on their website which
may be helpful.
Cause of inflammatory
bowel disease discovered
Interaction between gut bacteria and
mucus layer cells
Chronic inflammatory bowel disease (IBD)
is becoming increasingly widespread. Until
now, however, the underlying causes of
the inflammation responses were unclear.
Scientists at the Technical University
of Munich (TUM) have now identified a
mechanism that triggers a problematic
interaction between intestinal bacteria and
cells in the intestinal mucus layer in XLP2,
a condition associated with IBD. The team
believes that the results can be applied to
other intestinal diseases and could offer
approaches to the development of new
drugs.
The billions of bacteria living in the human
gut – known collectively as the microbiome
– are of enormous importance. They help
with digestion, among other functions.
Consequently, the immune system in the gut
must be extremely well regulated: It should
fight only harmful pathogens without attacking
useful microorganisms. However, this fine
balance can be disrupted by various factors.
A defect in the gene XIAP, which causes
the rare disease XLP2, results in chronic
inflammation of the bowels in 30 percent of all
26